myoclonic seizures

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john1947

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Hi
Ihave PD since 2009,I had a small focal seizure in 2014 unconfirmed.Two months later i started myoclonic jerks.I found a desription of them recently.My jerks seem to start with intentional movement like pill rolling or reaching also side stepping.Then I also get a shock like pain and then jerks.They do seem to be more frequent but dont last long depending what Im doing.
I had a eeg in 2015 which rulled out epilepsy but a doctor now says I might need more eeg to confirm.I know these jerks can be caused by many things besides PD and epilepsy Trying to get doctors to rule out all possabitys before a DX.
My PD docs are unfamiliar with my problem so they like to play with psychgenic babble.Very unprofessional an d it makes me lose faith in the profession.Having PD is bad enough without adding poor care on top of it
Well also the docs here think more of their peers and their mistakes then caring for a patient.
I hope the epileptic patients here do better than the parky community in care
thanks
john
 
Hi John - Sorry you aren't getting good care! That is so frustrating. Is myoclonus not common in PD? What about it makes the doctors think it is unusual?
PS I also have myoclonic jerks. Usually they are triggered by light touches or when I am drowsy. I do have other types of small seizures that can be triggered by certain types of movement. The shock-like feeling you describe usually comes before my jerks too. It's not painful though. Hopefully that information helps you at least a little bit!
 
Hi John --

My cousin has Parkinson's and he has developed non-epileptic Myoclonus as a symptom of the PD. I hopeI hope you are able to get some answers soon. If you can see an epileptologist (epilepsy specialist) that would be helpful in ruling epilepsy in or out as a cause.

Do you have specific triggers similar to what Zombelina mentions? Do they happen at particular times of day? Not all seizures have identifiable triggers, but if you are able to pinpoint a trigger or a pattern, that will be a plus.

best,
Nakamova
 
Hi John,
Sorry to hear that you are having myoclonic seizures I had them for awhile until I was put on vimpat and then they stopped. I saw an Epileptologist and they did a sleep study on me finding I was having seizures in my sleep a couple of hours before I would wake up in the morning. If I may ask have you noticed a pattern in the time of day or night these seizures happen? I always had the seizures right after I went to bed or a little while after I woke up in the morning. I wish you the best of luck and May God Bless You!

Sue
 
Hi Sue
when i wake up all I have to do to get them ging is pill rolling .They go on for awhile and then stop till I move around and stop again.Seems low ledopa for my PD makes them stronger but they still can come even after i take the levadopa
Triggers are overexercise,fasting,strobe light senstive and pain.
Thanks for your reply
 
Hi John,

What really helped find out what was causing my myoclonic seizures is when my Dr. did a sleep study on me and found I was having seizures in my sleep and this in turn was what was causing the myoclonic seizures. You may want to speak with your Dr. and ask them to do a sleep study on you to see if they notice any seizures in your sleep or any other possible sleep disorder that can be triggering the seizures. I wish you only the best and May God Bless You!

Sue
 
Hi I use a cpac machine now for sleep apnea,I dont get them in bed unless I move aroundIll ask my doctor i have for thesleep apnea and let him know what you found out.
Thanks again for responding to my post
john
 
myoclonus update

I have had PD since 2009.I started having myoclonus three years ago.
I got little support with my doctors.I guess once Dx with PD symptoms regardless seem unimportant with professionals.So I had to treat myself.
Awhile ago I found a change in brand of my carbilevadopa I take for PD helped diminish them.But they came back after my CPAC machine for sleep apnea failed for a few days.They again went away after I resumed using my CPAC.
Recently I went to Denver and my apnea came back,seems alitude an throw off the machine.The jerks came back with my sleep apnea.
I also found too much white sugar can aggravate them.I switched to honey in my coffee and it helped reduce the few I got.
My big help till the drug discovery was if I stayed focused I could stop the jerks as i hardly ever got them driving .
I hope some of my findings help others here struggling with myoclonus
 
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